The Good Doctor (19 page)

In another case, a Mount Sinai kidney specialist—who my father believed was a “master of his craft”—was planning to initiate hemodialysis on an eighty-five-year-old woman who had managed to live more than eight years with leukemia but had recently developed kidney failure and several other serious medical problems. Fortunately, however, “the good Lord intervened”: the patient quickly died one weekend, thereby preventing the doctors from robbing her “of the dignity and independence she’s maintained these many years.” Was my dad correct? It is impossible to know, but he did not let the nephrologist off the hook, telling him that the patient’s sudden death confirmed that dialysis would have been a mistake.

Another case that my father encountered was not at the Mount Sinai but in Philip Roth’s 1991 book
Patrimony
, which he read during a visit to my home. Roth’s elderly father, Herman, who had been diagnosed with an inoperable brain tumor, had carefully completed a living will stating that he did not want to go on a breathing machine in the case of impending death. Yet when the dying man arrived unconscious to the emergency room, the attending physician had urged the younger Roth to approve the use of a respirator. Not surprisingly, my father was livid. “The fact that our sophisticated world of instant communication cannot incorporate the final wishes of a dying man and his family,” he wrote, “is an indictment of our approach to life and death.” Happily, Herman Roth’s wishes were ultimately honored.

There was one issue as to which my father was clearly right, twenty years ahead of most others: his objection to the use of percutaneous endoscopic gastrostomy (PEG) tubes to feed patients who had dementia, cancer, or other end-stage conditions and could no longer eat. His gripe was the same as with other technologies. Putting these stomach tubes into “elderly, totally incapacitated nursing home patients” prevented them from “dying in peace and dignity after a lifetime of earning the right to do so.” Indeed, they wound up dying “more horrible deaths,” with “flexion contractures of their limbs and festering and penetrating bedsores—skeletal and blank-eyed remnants of the vibrant alive people they once were.”

If such language brought to mind victims of the Holocaust, it was not coincidental. In one journal entry, my father wrote: “I jokingly tell some of my associates that when the Nuremberg trials are reconvened, I will submit their names as ‘war criminals’—but I am not entirely joking.” He planned to ask the chairman of medicine to set up a committee to help patients, families, and doctors who were “too weak or insecure to reach these decisions on their own” decline PEGs when appropriate. By the early twenty-first century, my dad had been vindicated. There were definitive data indicating that such feeding tubes did not prolong the lives or alleviate the suffering of nursing-home patients. It was more appropriate and humane to simply let such individuals eat what they wanted and keep their mouths moist.

An excellent example of a case in which my father believed that the focus on a patient’s infection entirely missed the bigger picture involved an elderly man who had been hospitalized for nearly six months after breaking his hip and who then experienced a cascade of complications, including infection after infection. “My role in all of this,” my dad ruefully noted, “was to juggle his antibiotics, risk severe toxicities from the multitude of drugs employed and constantly re-adjust and re-dose according to the circumstances.” My father was thrilled when the family finally acknowledged the reality of the situation and took the patient home to die, but he thought it should have happened much sooner. In contrast, he had nothing but the highest praise for Jacqueline Kennedy Onassis when it was announced in May 1994 that the former First Lady had declined treatment for pneumonia and returned home to die when doctors discovered that her aggressive lymphoma had spread to her liver. Her courageous decision, he wrote, had been a bookend to the “strength and remarkable behavior” that she had demonstrated at the time of John F. Kennedy’s assassination.

When discussing these types of issues, my father and I were largely on the same wavelength. As a house officer during my rotations in the medical intensive care unit and elsewhere on the medical service, I, too, had been highly perturbed at what I believed was the inappropriate prolongation of life. But there was also a huge disconnect between the two of us. My remedy for correcting this problem was to apply the tenets of the new bioethics, working with both patients’ families and physician colleagues. Leading bioethicists had developed sophisticated strategies, such as living wills and other advance directives, for addressing the goals of care in end-stage patients. In contrast, my father, trained in an era in which experienced, compassionate physicians took the bull by the horns, had little interest in negotiation and debate. He made no bones about what he thought of bioethics, even though I was working in the field. Ethicists, he wrote, are not “in a comparable position to those of us who actually watch the day-to-day, hour-by-hour pain and suffering of the hopelessly ill.” Many, he added, hadn’t the foggiest idea what
Primum non nocere
(First, do no harm) really meant.

Over the years, particular cases caused genuine disagreement between my father and me. We were always civil; the Lerners were not one of those families (the kind that exist in the movies, at least) who had screaming fights about right and wrong at the dinner table. But there was real conflict. One of our more memorable discussions concerned the legendary comedian George Burns, who shared a birthday with my son, Ben. Burns was turning one hundred on January 20, 1996, Ben’s third birthday, and my parents were in town for Ben’s party. At some point that day, my father posed the following theoretical question: If Burns suddenly had a massive heart attack and developed heart failure and kidney failure as a result, would I dialyze him? I said yes, assuming that Burns or his family wanted to give it a try. Patient autonomy and informed consent were central. My father did not entirely disagree but, predictably, was more concerned with the bigger picture. Was dialysis ever appropriate for centenarians? Wasn’t it likely that Burns would be too sick to recover, thereby meaning that any use of dialysis, even if temporary, would merely prolong the dying process? Fortunately, from my dad’s perspective, Burns died suddenly of cardiac arrest forty-nine days later, before the doctors could get to him.

We also quarreled over one of my patients, a woman with end-stage liver disease. Despite her severe illness, this woman genuinely hated to come to the doctor. When I made helpful suggestions about possible interventions to buy her some time, she was always polite but never really interested. She made it clear to me on several occasions that she understood her prognosis and had no interest in heroic interventions. As a result, I strongly encouraged her to fill out a health-care proxy form naming someone to make medical decisions for her if she became unable to do so. If she did not fill out the form, I explained, she might be subjected to unwanted interventions when she eventually deteriorated. My patient dutifully returned the form at her next visit, having selected her husband to be her proxy.

One morning, this patient arrived for a regularly scheduled appointment, and my secretary immediately sought me out to tell me that she did not look well. It was a correct assessment. The patient’s blood pressure was extremely low. We rushed her to the emergency room, where it became clear that she had a severe blood infection. Given her liver disease, she was going to die, even if we placed her on a ventilator. I sought out her husband, who had come to the appointment with her, and asked him, as her health-care proxy, what we should do.

The husband, who I had not met before, responded angrily. He seemed not to understand the concept of a proxy and was appalled that I was suggesting that we not do everything to try to save his wife. Given this response, we intubated the patient and sent her to the MICU, where they gave her antibiotics as well as other medications, known as pressors, to increase her blood pressure. As predicted, nothing worked. She continued to deteriorate and died on a ventilator a few days later, in just the manner she had wished to avoid.

I made a point of telling my father about the case, both because it had been very disturbing to me and because of his growing interest in these types of situations. When I got to the part about the patient’s husband insisting that his wife be intubated, he interrupted me.

“You told him that you couldn’t do that, right?” he asked.

“No,” I said.

“But she was
your
patient and had told you that she did not want heroics,” he replied.

I went on to explain that while that was true, her husband was her proxy and was therefore ethically and legally empowered to make the decision, even though I believed it to be the wrong one.

My father knew all about health-care proxies. And he knew that the husband might have tried to sue the hospital if we had disregarded his wishes. So my dad clearly understood my reasoning. But I knew that he was disappointed in me. I had put logistical concerns in front of my patient’s welfare. His provocative way of viewing the case was that, at least in this one instance, I had become one of those ethicists who did harm.

When my father was confronted with a similar situation, he acted very differently. This was the story that began this book, in which he actively obstructed the resuscitation of a patient who did not have a do-not-resuscitate order. Our most pointed exchange about bioethics and the changing world of medicine occurred when he told me what he had done.

Fortunately, my father documented the details of the patient’s illness and his actions in a six-page typed document that he wrote in October 1996—shortly after the event—and placed with his journals. The patient, who he described as elderly, had both severe arthritis and vascular disease. She had apparently not been out of bed for several years and had already been hospitalized at the Mount Sinai for several weeks. My father had been intimately involved in her care, treating several complicated infections. Since the woman was immobile and had a very poor appetite, she had developed massive tissue breakdown in the area of her lower back and buttocks. He vividly described her daily misery: “Every time this woman was moved or even touched, the raw denuded skin would be further abraded, bleed, and give her agonizing pain as the sheets or dressings pulled away.” It was impossible, he added, to position her comfortably. The woman had already declined certain potentially lifesaving interventions, such as a PEG tube, indicating that she was well aware of the terminal nature of her condition. Her primary physician, however, had not used these decisions as an opportunity to clarify her larger treatment goals or the issue of resuscitation.

When my father’s infectious diseases team first realized that the patient had died, he decided, “unilaterally and without any discussion,” and in “total disregard of the concept of patient autonomy,” not to call a code, which would have summoned the chest team to begin resuscitation efforts. But when he left the floor, other staff members had misgivings. A house officer called the patient’s primary physician, who told him to call a code even though roughly ten minutes had elapsed. When my father heard the announcement on the overhead page system, he returned to the patient’s room, “quickly dispersed this effort and chased everyone out of the room.” It was during this period that he physically placed himself between the patient’s body and those attempting to resuscitate her.

That my dad could essentially get away with aborting two resuscitations on a patient with no DNR order was a testament to the enormous respect and authority he had at his hospital. It was a throwback to the Osler and Loeb eras, when deference to the senior physician’s judgment—even when it directly contradicted protocol—was the rule.

In justifying his actions as “correct and merciful,” my father used familiar language. The patient’s life was unbearable, her prognosis was terrible, and all efforts to reverse her deteriorating situation had been either fruitless or declined by her. “We were stymied and stumped and she was paying the price for our inability to reverse things,” he wrote. In this rendition, the cardiac arrest was simply the natural progression of someone with her incurable illness. The patient was dying and then had died. Just because technology was available and the woman was in a hospital did not mean it should be used. My father was not given to proclamations, but here he made one. He had acted “in the name of common, ordinary humanity” and based on his “30+ years as a physician responsible for caring and relieving the pain of my patients who can’t be cured.” The nurses, he wrote, were in agreement with his actions, but some of his fellow physicians had objected on both ethical and legal grounds, fearing that such behavior could lead to malpractice lawsuits.

When my dad told me the story, it was a frightening and jarring moment. I was, in fact, firmly on the side of his physician colleagues. Even though I had enormous respect for his clinical expertise, his actions had been far too godlike for me. Certainly such behavior would never have been permitted at my hospital. Ever dutifully documenting major events in his journals, my father confirmed that during that conversation I had, indeed, been “aghast.” I was sure enough of my position that when I first saw his notes on the case, which he entitled “A Criminal Act,” I assumed he was referring to his own behavior as criminal—albeit justifiable, in his eyes. But in fact, what he was terming
criminal
was the notion of attempting to resuscitate such a patient, one “unfortunate enough to try and die in a modern American hospital who has failed to sign a piece of paper or verbally communicate what her life-ending story should be.”

By the time of my father’s dramatic intervention, I was back at Columbia, having become a faculty member there in 1993. I had finished my Clinical Scholars fellowship and completed my coursework toward my PhD in history. Between 1993 and 1996, I would write my dissertation, occasionally traveling back to Seattle for research and my dissertation defense. Columbia was the logical place for me to begin my career as an assistant professor interested in practicing internal medicine and studying and teaching the history of medicine. I was familiar with P&S and Presbyterian Hospital, and the Center for the Study of Society and Medicine, where I had already done research, seemed an appropriate home for my nonclinical activities.